Decisional Regret Surrounding Dialysis Initiation: A Comparative Analysis

Rationale & Objective Dialysis comes with a substantial treatment burden, so patients must select care plans that align with their preferences. We aimed to deepen the understanding of decisional regret with dialysis choices. Study Design This study had a mixed-methods explanatory sequential design. Setting & Participants All patients from a single academic medical center prescribed maintenance in-center hemodialysis or presenting for home hemodialysis or peritoneal dialysis check-up during 3 weeks were approached for survey. A total of 78 patients agreed to participate. Patients with the highest (15 patients) and lowest decisional regret (20 patients) were invited to semistructured interviews. Predictors Decisional regret scale and illness intrusiveness scale were used in this study. Analytical Approach Quantitatively, we examined correlations between the decision regret scale and illness intrusiveness scale and sorted patients into the highest and lowest decision regret scale quartiles for further interviews; then, we compared patient characteristics between those that consented to interview in high and low decisional regret. Qualitatively, we used an adapted grounded theory approach to examine differences between interviewed patients with high and low decisional regret. Results Of patients invited to participate in the interviews, 21 patients (8 high regret, 13 low regret) agreed. We observed that patients with high decisional regret displayed resignation toward dialysis, disruption of their sense of self and social roles, and self-blame, whereas patients with low decisional regret demonstrated positivity, integration of dialysis into their identity, and self-compassion. Limitations Patients with the highest levels of decisional regret may have already withdrawn from dialysis. Patients could complete interviews in any location (eg, home, dialysis unit, and clinical office), which may have influenced patient disclosure. Conclusions Although all patients experienced disruption after dialysis initiation, patients’ approach to adversity differs between patients experiencing high versus low regret. This study identifies emotional responses to dialysis that may be modifiable through patient-support interventions.

Participants consented to participation in the follow-up interview if selected; however, patients were informed that they could decline the interview if they no longer wished to participate when recontacted.All patients were adults who consent to participation in English and were receiving ongoing maintenance dialysis (both in-center and home modalities) through 1 of 3 outpatient facilities.Patients with major barriers to consent such as cognitive impairment were excluded.

Quantitative Survey
The paper-based survey was administered in-person by trained study personnel (Item S1).Patients could choose to return the survey immediately or via mail.The survey took patients 10-15 minutes to complete independently.Study staff were available for participant questions while they filled the survey and could read questions aloud to the participants if they preferred.
The survey was designed to assess patient characteristics including self-rated health, illness intrusiveness, and decisional regret about living life with dialysis.Illness intrusiveness asks participants to reflect on the extent to which their illness and/or treatment interferes with 13 aspects of their life. 18Decisional regret was measured using the decision regret scale (DRS), 19,20 which asks participants to rate their agreement or disagreement on a 1-5 scale with 5 statements, as follows: "It was the right decision"; "I regret the choice that was made"; "I would go for the same choice if I had to do it over again"; "The choice did me a lot of harm"; and "The decision was a wise one."

Quantitative Data Analysis
In DRS items 2 and 4 are reverse coded, such that for all items, a higher score indicates more regret.The scale is interpreted as a 0-100 range, in which 0 equals no regret and 100 would indicate the highest regret.To score the total scale, 1 is subtracted from each item's value and then multiplied by 25.All items are then averaged for the total scale score.The DRS, commonly used in SDM studies, has only been used once with dialysis patients specifically. 14llness intrusiveness scores are scored on a 1-7 scale; items marked not applicable are coded as 1.All items are totaled together for a composite score ranging from 13 to 91.This scale was developed in a dialysis population and has been widely used in chronic disease. 18e examined the correlation between patient-reported intrusiveness and DRSs because we planned to study in the follow-up interviews both aspects of illness intrusiveness and decisional regret.If these 2 measures were well correlated, a single study to examine differences between high or low regret and high or low illness intrusiveness would have been warranted.However, in the absence of such a correlation, 2 separate interview samples would be required.No power calculations were conducted before initiating the study.Ultimately, 2 studies were required with the illness intrusiveness data published elsewhere. 17atients were sorted into quartiles based on their DRS scores.Patient demographics were summarized using percentages for categorical variables and quartile values for continuous variables.Differences between the lowest and highest quartiles for decisional regret who were interviewed were examined.No formal testing was done because of the low number of patients included in interviews.Statistical analysis was performed using SAS version 9.4.

Qualitative Interviews
Patients were purposively sampled for interviews to represent the lowest (DRS = 0) and highest (DRS of >25) quartiles of regret to identify predictors and modifiable contributors to decisional regret.The distribution of scores were skewed toward low to no regret.As such, we also chose to sample patients who answered, "I wish I had never started dialysis" to the question "How do you currently feel about starting dialysis?"regardless of their score on the DRS.With these patients included, 15 patients were categorized as high regret and are referred to as the high regret group (high regret).Patients who scored 0 on the DRS are referred to as the low regret group (low regret).For patients selected for in-depth interview, the duration of interviews was anywhere from 60 to 90 minutes. 21The interview guide is provided in Item S2.Interviews were voice recorded, transcribed verbatim, and documented with field notes.Interviews were conducted (NE, AB, SW, AT, and PO) in the dialysis center with option of interviewing in a private room or a patient's home if they preferred.Interview training, progress, quality, and ensuring saturation was achieved were overseen by an experienced qualitative researcher (KRB).The interview team asked questions about patients' experiences with decision-making, living with dialysis, and reasons for regret using a semistructured format (Item S2). 21No compensation was provided for filling the survey, but $25

PLAIN-LANGUAGE SUMMARY
As part of a quality improvement initiative in our dialysis practice, a patient stated, "I wish I never started dialysis."This quote served as the catalyst for embarking on a research project with the aim to understand why patients living with end-stage kidney disease have regret about starting and continuing dialysis, a lifesaving but time-intensive measure.We surveyed and interviewed patients on the topic and learned that patients experiencing regret had a disrupted sense of self and blamed themselves for their need of dialysis.Patients with little to no regret demonstrated positivity and self-compassion.These findings will help health care professionals as they work with patients considering dialysis or having newly started dialysis.
was provided for participating in the interview.Interviewers had no previous relationship with patients interviewed and were in no way connected directly to their care.

Qualitative Data Analysis
There were a total of 21 interviews and transcripts analyzed using an adapted grounded theory approach 22 facilitated with NVivo software.After reading all interview transcripts, 5 were coded line by line to create a codebook (SW, NE, AT, and PO).Codebook creation was supervised by KRB, BT, ASP, and KP interview transcripts were collectively coded, and disagreements were resolved after discussion.Information was summarized into themes by KRB, BT, and ASP across patients, and then examined to compare between the high regret and low regret.Codes and themes were discussed with coauthors to consider their perspectives and once agreement was reached, they were finalized to ensure rigor and credibility.

RESULTS
Out of 128 patients approached, 78 patients agreed to participate in survey.Overall, 35 patients were approached for interview, 20 were in lower quartile (low regret) and 15 were in high quartile (high regret).Twenty-one patients agreed to participate (8 high regret and 13 low regret), which was sufficient to achieve thematic saturation.Three patients in the low regret and no patients in the high regret were on home dialysis modality and rest were on in-center hemodialysis.Table 1 depicts patient demographics of the patients that were interviewed; full survey responses by quartile are provided in Table S1.

Qualitative Findings
Four themes emerged from the comparative analysis: mindset, reconciling life while receiving dialysis, biographic disruption, and understanding and learning of treatment requirements (Patients' quotes, Table 2).There were themes that were expressed by both groups, such as inability to travel and dietary restrictions.

Mindset
In this study, mindset refers to a patient's belief about their ability to respond to illness.Low regret participants expressed positivity in their quotes and painted a lighter picture of their illness course; they seemed to no longer be in conflict with dialysis.In contrast, those in the high regret group indicated they felt resigned to their fate.The mindset of patients influences their health behaviors and outcomes and shapes how they perceive their illness.It provides us with valuable insights into how patients view and approach their condition.Patients in the low regret group, with their positive mindset, are able to see their illness in a more empowering light, enabling them to navigate through challenges and find ways to thrive.On contrary, the high regret group's mindset reflects the dichotomous choice they face, in which dialysis is seen as a last resort.

Reconciling Life While Receiving Dialysis
Patients' adjustment to life while receiving dialysis was evident in their coping strategies, which is distinct from the theme of mindset.Although mindset refers to patients' thoughts, beliefs, and perceptions about their illness, coping strategies involve the actions and behaviors they employ to adapt to life with dialysis.Significant differences in coping strategies were observed between the low regret and high regret groups, with the former employing more positive coping mechanisms.The low regret patients continued to have important goals for their lives despite dialysis.They were able to leverage their social support and demonstrated resilience by continuing to move forward.The high regret patients framed dialysis as an obligation for a variety of reasons, such as to stay alive, a lack of other options or a duty to others in their social circle.These differences in coping strategies highlight the diverse approaches patients take in adapting to life while receiving dialysis, with the low regret group demonstrating a more positive outlook and proactive engagement, while the high regret group viewed dialysis as a necessity with limited alternatives.Furthermore, coping strategies serve as an indicator of the contrasting approaches taken by the 2 groups of patients in actively responding to and reconciling with the challenges posed by their illness.

Biographic Disruption
Biographic disruption occurs when a chronic disease disrupts various aspects of a person's life, such as their sense of identity, future plans, and interpersonal relationships, resulting in significant changes to their biography and social roles.It highlights the transformative impact of illness on individuals, altering their narratives and requiring them to adapt and navigate new circumstances. 23istinct patterns of biographic disruption can be observed between patients with high regret and low regret.Those in the high regret group reported that dialysis had a detrimental effect on various aspects of their lives, including their ambitions, quality time with family, and significant life events.Patients expressed a profound sense of interruption in their very identity, with the emergence of a new identity shaped by their disease.Low regret patients experienced physical disruptions as well caused by the treatment, did not express the same sentiment.The subjective perception of disruption varied between the groups, indicating that the experience and expression of biographic disruption differed between individuals in the 2 groups.
Furthermore, high regret patients reported losing social connections and time with loved ones and expressed an inability to nurture relationships, missing activities that    Pawar et al

Understanding and Learning Treatment Requirements
We observed differing levels of illness learning and understanding between the 2 groups.Both groups acknowledged the importance of time in comprehending the dialysis process, highlighting the significance of learning from fellow dialysis patients.In addition, experiential learning through engaging in dialysis was considered the most effective method of gaining knowledge.Despite these similarities, there were notable differences between both groups.High regret patients tended to engage in self-blame when faced with challenges in understanding their illness and its management.Conversely, low regret patients exhibited more self-compassion and were inclined to generalize their difficulties, recognizing them as expected and shared by others in similar circumstances.

Challenges With Life While Receiving Dialysis
We observed that some challenges were experienced equally between groups such as restricted travel and dietary changes.Travel is related to patient's ambitions and biographic disruption.For example, a musician could not perform and had to give up playing because they could not travel.However, certain patients in both groups managed to adapt to short trips, although they noted that it still imposed limitations on their freedom and necessitated a substantial investment of time and effort.Those undergoing home dialysis were able to capitalize on this flexibility, enabling them to engage in more travel opportunities.

DISCUSSION
2][13][14][15] In the only study using the DRS specifically, investigators found low regret in w8% of patients receiving dialysis in Singapore, 14 similar to our low levels of regret overall.However, we observed that patients in both groups were equally informed about a discussion about prognosis.Despite our expectations that illness intrusiveness, a measure of the impact of kidney failure on one's life, would be associated with decisional regret, this proved untrue (Table S2).Previous studies have demonstrated that illness intrusiveness is correlated with lower quality of life and greater symptom burden, such as pain, fatigue, anxiety, and depression. 24This finding may be because regret reflects the patient's remorse for their "I miss traveling.That's the biggest impairment to being on dialysis."(70s, in-center HD) My husband and I like to travel.We can't do that anymore.That's why we take these little one day overnight things.(70s, in-center HD) "I just only one wish to travel a lot but we don't.That's okay.I feel bad for my wife cannot go.I told her go alone but then oh, we have to go together."(Male, 60s, in-center HD) "If you consider travel time down here, time for set up, time for take down, plus the runs.You're looking at almost 15 hours in a week.That's a part-time job.Yeah, it's just a real pain in the rear.Biggest limitations I'd say is the diet and travel."(30s, in-center HD) Abbreviation: HD, hemodialysis.
current choice given how they are able to handle their perceived burden.It is plausible that someone who has a high illness intrusiveness could have low regret, should they have appropriate support of their capacity to cope with those burdens. 25However, high illness intrusiveness has also been correlated with lower patient capacity, 26 so this relationship may deserve further quantitative inquiry.
2][33] Integrating the biopsychosocial model and addressing mindset can be beneficial in enhancing the patient experience.][40] Patients expressing low regret opted for healthier coping mechanisms, such as leveraging social support, avoiding self-blame, engaging actively, and using adaptive coping strategies.Coping strategies used by patients with chronic illness including kidney disease have been described, [41][42][43][44][45] with known coping strategies that have been beneficial for patient experience. 46,47Of importance, patients' choice of coping strategies can change over time, influenced by their personal experience, social support system, individual beliefs, and availability of resources. 48,490][51][52][53] In existing literature, there are instances of studies emphasizing coping strategies beneficial for patients.For instance, one research study suggests that optimism indirectly affects health outcomes by promoting healthy behaviors, adaptive coping techniques, and enhancing positive mood.In addition, spirituality or religiosity may also play a role, particularly in certain populations. 41,54,55n our cohort, we observed that patients with low regret demonstrated strategies for resolving each stage of disruption, exhibited a capacity for bouncing back and maintained their pretreatment identities.Assisting patients in understanding and overcoming the disruptive process can significantly enhance patient-centered care. 56,57Furthermore, although not statistically significant, in our study patients may regret the treatment choice less with home dialysis modality, perhaps because of the preservation of some normalcy.This possibility should be examined further in future studies.
Finally, although patients from both groups acknowledged the challenges of navigating kidney disease and expressed the difficulty in fully comprehending the treatment process, patients with low regret demonstrated selfcompassion and patients with high regret felt a sense of shame.This highlights the possible role of guidance from peers receiving dialysis about navigating this process.Patient narratives shared by peers can provide valuable support in coping with their illness and assist them in making informed health care decisions. 58,59n summary, our study indicates practical opportunities for interventions, such as addressing patients' mindset and providing coaching on coping mechanisms, which may aid patients in navigating challenges more effectively.1][62][63] Interventions that engage and activate patients may enhance their treatment satisfaction and decisionmaking process. 64Finally, it is important to acknowledge the significant overlap observed among the themes.This overlap could potentially be attributed to the fact that the emerging themes exist on a spectrum of related constructs, including patients' acceptance, coping strategies, response to illness, and adaptation to disruptions.
Our study contributes to the existing knowledge by providing a comprehensive analysis of decisional regret among patients living with dialysis.With a dialysis vintage of less than 3 years, patients with absolute decisional regret may have withdrawn from dialysis 65,66 and may not have been captured in our study.Decisional regret scale has limitations in quantifying extent of regret accurately, and regret is considered as a continuous variable rather than categorical.Therefore, we also chose to sample patients who answered, "I wish I had never started dialysis" to the question "How do you currently feel about starting dialysis to include patients with partial regret?"The emotion of regret in general, may signify a process of reflection and can change over time and is not always a negative emotion. 67owever, in patients living with kidney failure, decisional regret affects their experience and satisfaction therefore, it is important to address. 68,69Surveying and interviewing patients in center has advantages and disadvantages.In the case of surveys, it provides the opportunity to help participants understand and correct doubts about survey questions, but some patients may not be comfortable expressing regret.Similarly, patients were offered the option of private clinical space or home interviews, but not all patients chose this.This influenced our decision to consider minimal signal of regret based on DRS score as evidence of regret.
In conclusion, the differences observed between the low regret and high regret groups highlight contrasting perspectives and responses to challenges.These emerging themes indicate potential psychologic and cognitive differences in how patients perceive and adjust to life while receiving dialysis, providing valuable insights into the complex factors that contribute to regret following the initiation of treatment.

Table 1 .
Participant Characteristics and Survey Responses by DRS Quartiles (Continued)

Table 1 (
Cont'd).Participant Characteristics and Survey Responses by DRS Quartiles Which of the following options were presented to you as treatment options to manage your kidney failure?(Check all that apply.)(choice = none of the above), n (%) (Continued)Pawar et al mattered to them, and distress about being a burden on others.Patients in the low regret group shared strategies on how they navigate and overcome barriers to engage in important life activities.The utilization of social support played a role in assisting patients in overcoming the challenges of biographic disruption.

Table 2 .
Themes and Illustrative Patient Quotations "Well, the diet is a real shock.It's very hard, although I've learned that now and then you can go off the diet and not be too-at first I was real strict about it, and I lost 10 pounds practically.Now I've got back that weight."(70s,in-centerHD) "It's not dialysis, per se.The dialysis is what keeps you alive.You start feeling better, and so you can function more as a normal person, which I try to do all the time.Whenever there's any little glitches, I always try to find solutions.How can I make this, so I can be more like a normal person."(60s,in-centerHD) "Continue making goals for yourself and keep achieving things cuz it's not the end, it's not the end of your life.It doesn't, that chair ties you there 3 days a week but you can still do things."(Malein60s, incenter HD) "I feel like a-I don't know but I feel like this a last resort though.I feel like I have to obligate to do that in order to survive.That's how I feel.This is I can live not without that.I learn that.This is the obligation."(Male,60s,in-center HD) "My kids.Their smile or just seeing them.Waking up to them every day.If I'm having a bad day or upset for whatever reason, they just-By keeping me alive, because I'm pretty sure if I wouldn't have chosen this, I'm sure I wouldn't be here right now." (20s, in-center HD) Biographical disruption "Yeah.You have to know a month ahead of times to let the social worker here know, so she can set up dialysis appointments for you wherever you're going.You almost have to fly." (Female, 70s, in-center HD) "I still have my days that I don't feel good at all, but I have way more good days than bad days and I like that I can continue to work full time.It's important to me.Work is a good distraction for me from life and all that it brings.I enjoy being at work and I enjoy what I do.It's important to me." (40s, in-center HD) "Well, it doesn't take much, but the real joy I guess is I have this nice little family, a husband, and a dog really bad, and I just-I couldn't stay at my job."(20s,in-center HD) "It's a lot of change.Life change.Because you get stuck with this one.You cannot do anything more like we normally did in the past."(60s, incenter HD) "Just I miss my kids.It's hard to be away from (Continued)

Table 2 (
Cont'd).Themes and Illustrative Patient Quotations didn't understand at first, cuz they would ask me.I didn't know.Then slowly I understood what they were askin' because if you pulled too much off.it cramps.You get dizzy.You get to know your own limits.It's important to pay attention to what they're doin', and the rate of flow, because that can affect a lot about how I feel.I'm the only person doin' that right now here that they are taking care of right now so it's just not really, but I had talked to other people online and so I knew that it was a possibility.I don't really know that there was-I think that it's a lot of work that I was, I knew it would be work but it's definitely a full time gig."(50s, in-center HD)